i get that too (the itching). wish i could tell you the answer. i dont think it reason enough to stop personally, i would share this with your dr or the infusion clinic for sure!

Daisy, since I'm not a dr I can only tell you my experiences with Valium....which is in the same family of meds as Klonopin. Prior to having an MRI I take 10mg. of Valium. It makes me feel a little loopy and off balance but I prefer that to feeling like I want to scream, having my heart pounding so hard it feels like it will burst and feeling as if I might pass out. Later on the Valium makes me sleepy but I don't sleep through the MRI because I'm still a bit nervous but I'm able to handle it with the Valium.

I have a friend who has panic attacks on a regular basis. She takes something for it that is similar to Klonopin and Valium. I know it took her over a month of taking the med daily before the side effects wore off and she felt comfortable driving a car. I think she takes 2 tablets a day.

When I first began Ty I was nervous about every little thing. I didn't even notice that I was doing better because I was so focused on all the side effects they told me to watch out for. It was my husband who noticed that I began to walk a bit better. I was using a walker in the house most of the time but, other times I would hobble a bit from chair to chair. I had stopped using a wheelchair in the house. He realized that I was able to walk a straight line instead of weaving :)

hugs,
Shayna

Is it possible that it is nerves or an allergic reaction to something else that is causing this?
I would be concerned if it happened during infusion or within 48 hours of infusion. None of it sounds like a reaction to Tysabri since it's been a few weeks since your infusion, but the best person to ask would be your physician.

I questioned myself about every little twitch when I started Tysabri, but decided that it was probably because I had heard too much testimony about the concerns and fears about what might happen with Tysabri, since it was so new and not a lot of people understood how it worked. I resolved to relax, sit back and just be aware of what was happening and write it down and then when I read over what I had written a few days later I would realize that it had passed without a problem. The things that did not pass were reported to my doctor and we dealt with them at my regular appointment every three months.

I hope things get better for you. Tysabri is not for everyone and some people cannot tolerate it as well as others. It doesn't mean you are a failure, it just means it didn't work for you.

Some of us couldn't take the interferons, some of us couldn't take copaxone, some have bad reactions to steroids, and for some, none of the meds that were available worked for them. We are lucky to have choices now, because less than 25 years ago there were no drugs to choose from, just drugs to try and treat the symptoms. Now we have the ABCRs and Gilenia and more coming out soon. Scientists are working on stem cell treatments and investigating venous insufficiency and other things, identifying the genes that appear to relate to MS and tying in what they have learned while working on other diseases that may help people with MS.

I still believe that there will be an understanding about the whats and whys of MS in my lifetime, as well as a way to stop it. :)

Today I had # 50.

It was a quiet day, no problems, no concerns...

except that the infusion center moved since last month and they forgot to tell me. :confused:

Fortunately I knew where they were going, so they didn't succeed in hiding from me.:D

River, you are going to keep getting tested, right?

Congrats on 4 good yrs on TY.:)

hey river, are you still on every 4 weeks? many i speak with at my infusion center are cutting back to 6 and 8 week intervals after a couple years

Tysabri #54
 

Hello All. I am new here and I am looking for all you fellow Tysabri users. I live in Germany (husband was transferred for work 20 months ago) so I am looking for some English support. Do not know many people that have been on Tysabri as long as I have. I love it, no reactions, and I have been stable for over 4 years.
yesteray was #54 and it took 6 times to find a vein. It freaked me out. I already have a hard time when I have to go to the hospital to test for blood. They always have to go to a few veins to get more than one vial to test from me.
My doctor here said I should start looking into Fingolimod the oral medication since I am having issues. So again stressing me out! Change medicine in another country.
The doctor that I go to only does the vein in the arms, no the hand. On the 6th attempt they sent me to a different practice to have the doctor put the needle in my hand and then I walked back to my doctors office and had my medicine.
How long can we safely stay on Tysabri? So many questions!!!
Thanks!!
:thud:

I got a call from my neuro yesterday.

I tested positive for the JC Virus.

Also, my neuro monitors CD4 T-cell level on all his Tysabri patients. My baseline was high....over 2000 (range 490-1700).

Anyone else have their CD4 cells monitored??

Here is a report by Elsevier about Neuroinflammation in MS: "Autoantibodies and autoreactive T cells against these myelin antigens have been detected in MS patients."

It said there was a type of CD4 T-helper cell that react against myelin.

What I read, is that there are some studies being done to correlate these CD4 cells to MS and other auto-immune disorders.

Source: http://www.direct-ms.org/pdf/Immunol...%2003%2006.pdf

So sorry Daisygirl.. I know what I'd do..:eek:

do you have any problems with finding a good vein any more? I have had 54, and I am. Have you thought how long you will be on Tysabri?
Thanks
Kara